Well, some nurses. And yes, this is “clean” …
As recently ranted, the school nurses refuse to give Pearlsky her life-saving seizure-minimizing-or-eliminating amino acid. The only reason I have been given for said refusal is because it does not come in a “pharmacy” bottle with a pharmacy label even though there are doctor’s orders for it and it is not identified by the FDA as a medicine.
I am fed up, especially with the school nurses, so what does Single Dad do? He writes an email … this time to the State Board of Registration for Nurses …
The key issue is whether or not school nurses can give my daughter her amino acid.
My children have a diagnosis of “Inborn error of amino acid metabolism.” They have a genetic defect and do not make this “non-essential” amino acid.
Because of the defect, Pearlsky has congenital microcephaly, severe psychomotor retardation, cortical visual impairment, intractable seizures and more. For more information on the extremely rare disorder, see here: [link to my non-profit]. Without supplemental amino acid, my daughter’s seizures go out of control within a day, and things go downhill from there.
The FDA classifies amino acids as “dietary supplements” and “food additives” as you can see here.
I purchase pharmaceutical grade amino acid in 5 Kg bags (basically minimally-marked large ziplock bag).
I mix a day’s worth of amino acid every morning to ensure that Pearlsky gets xxx mg/kg/day. I mix xx grams of the powder in 70 cc of water. She gets it in five doses through the day, two occur during school hours. She also gets tegretol, zyrtec, carnitor, and depekene at school. The nurse gives all except the amino acid. If we are lucky, an aide gives it.
Every one of Pearlksy’s doctor’s will (and most have) written orders for the amino acid to be given at school. She is followed by doctors at both xxxx and xxxx hospitals.
Note: The FDA refers to this amino acid on their “Listing of Food Additive Status Part II” and that regulation can be referred to here which starts with “The food additive amino acids may be safely used as nutrients added to foods …”
I would guess this is analogous to a student who is a brittle diabetic. Would the school nurse be allowed to give the child a protein bar, a spoonful of glucose, a homemade brownie, etc. that the parents sent in?
So the key question is, is there a reason that a school nurse cannot give Pearlsky her medicine?
THANK YOU for your time and consideration. Ask me ANYTHING, if it helps.
I then have a phone conversation with the “School Health Nursing Advisor” at the State Department of Public Health. She has a boat load of nursing degrees and is married to an engineer, what more could one want? I tell her that I am not trying to be an asshole, it is just that I am a voracious advocate for Pearlsky and want her treated appropriately and correctly. I tell her how great she has been so far and she jokes “tell my supervisor.” I ask who that is, and she said she is the woman who has been cc’d on the emails. We discuss the issue further. I ask her about the pharmacy bottle issue and discuss the farce of that. I tell her that for all the other meds, I pick them up from the pharmacy and deliver them to school, or school sends home an empty bottle for me to refill. There are no seals on the bottle, there is never anything proving what is in it. I ask the difference between my labeling a bottle or using the pharmacy’s. She agrees, there really is none. So we discuss the solution, it involves some jars I happen to have that are old, but have labels from a vitamin company that say the name of the amino acid. I can just fill those with the new amino acid I get. There is absolutely no reason the school nurses do not give the amino acid. At the end of the conversation she asked, “Can I ask the name of the school district?” “I’ve purposely not mentioned it before, but it is AnyTown Public Schools.”
Oh, I know Kay. We’ve worked together before.
She’s not been the easiest for us to work with.
There was quiet acknowledgement. I told the woman that I would write an email to the Superintendent’s office explaining what we discussed and I will cc her and the rest of the world. Then she said something very interesting …
When I see the email, I will cc everyone on the list and “voraciously” back you up.
That was fascinating, I just thanked her, but think about it. Why would she do that? The “normal” procedure would be if anyone questioned my email, they would then go to this woman. Why would she automatically back me up? Maybe she knows something from having worked with the head twit nurse in the district?
I have been in touch with Mary Ann, School Health Nursing Advisor at the State Department of Public Health both via email and on the phone. She has been exceedingly helpful and her contact information is below. She tells me that she knows Kay and has worked with her in the past.
Mary Ann assures me that if I bring powered amino acid in a manufacturer’s labeled container the school nurses certainly can compound it per my instructions and can certainly administer it to Pearlsky as directed. Because of FDA classification of the amino acid, doctor’s orders are not necessarily mandated for this, but that is a moot point since said orders already reside in the nurses’ office (a copy of which I gave you yesterday).
I can bring in the amino acid, as discussed here and with Mary Ann, and instructions for precisely how many grams of powder per cc of water is needed to make the appropriate doses. Please let me know if the approval of the State’s Department of Public Health is enough for this issue to be resolved.
Mary Ann’s contact information:
Mary Ann, MSN, RN, NCSN
School Health Nursing Advisor
State Department of Public Health School Health Unit
As always, thank you for your time and consideration.
And then, about an hour later, this arrives …
Because this amino acid is classified as a food product and not subject to state laws and regulations under 123B, school nurses can administer this product within the guidelines I have discussed with Pearlsky’s father and as he has described. Additionally, any local school policies and procedures should be followed that have been established for the distribution and administration of food products within the school.
Please feel free to contact me if there are any additional concerns or clarifications that I can help to address.
So there. F you, school nurses. I now have a friend. But there is one thing left …
By way of brief introduction, I am a single father with two severely disabled children. I also own a small high tech firm and have a small non-profit, that is to say, life is not especially easy.
There are those that appear to make life more difficult, those that are neutral, and the occasional people I deal with that “get it” and are helpful, knowledgeable, and make a difference.
I have only dealt with Mary Ann for a total of three or four hours via a couple of emails and a phone call, but she has not only made my life a bit easier, she has turned my attitude towards “school oriented” nurses around! She appeared (and I believe genuinely was) eager to help, to problem solve, to listen, to suggest, and to follow-up on an issue I was dealing with.
My first interaction was with Ms. T, I believe she is in another division, and she, too, was helpful in quickly responding to my call and re-directing me appropriately.
So in conclusion, I vote for an all expense paid trip for Mary Ann to the island destination of her choice, or, second to that, someone buying her a cup of coffee and telling her that, at least in this case, “job well done.”
To which I receive …
You are an astute man! Mary Ann is indeed a genuine, expert, kind, knowledgeable nurse and she tries so hard to assist families, as we all do in this small School Health Unit (4 nurses). It was very kind of you to send this as we hear so much sadness that a positive thanks goes a long way to keep spirits up. I am sending this to Mary Ann. She does not drink coffee but I shall be happy to buy her tea—or another drink of her choice.
My heart goes out to you as you have many challenges—and, I am sure, many joys also–with your children. They are fortunate to have you.
Thanks again. Mary Ann will be so pleased to receive this.
A. H. S.
Director of School Health Services
PS It has been a grueling day with budget cuts–and you made my day also!
That last part with the supervisor was very important. I now have two contacts at the very top of the food chain, in the State Department of Public Health. They will remember me and Pearlsky the next time we need help.
Note that there has been no response yet from the superintendent’s office nor the school nurses. I will keep you informed …
But these nurses, those in charge of the state’s school nursing, are empathetic and understanding as well as knowledgeable and caring. Isn’t that what nursing should be about? Aren’t those the nurses you could learn to love?